Around the Ship

Brothers playing Bingo.  It was a fun 10 minutes even if none of us won.

Twirl-girl dress and a stage - what more could Julia ask for?  I suppose a closet full of only twirl-girl dresses, but for now, the 3 she has will have to do.

Our bookends.  When Julia can't travel on Jonah's lap in his wheelchair, this is her second favorite mode of transit.  Luckily Noah is usually willing to oblige.

Such aa good looking group.

The bigs - although they annoy each other on occasion, they are truly the best of friends and "get" each other in ways that only siblings can.  It's usually a lot of fun to watch them together.

The littles.  There was a period of time where Jonah was easily irritated by Julia, but since coming home from the hospital we've seen their relationship blossom.  Jonah is enthusiastic to spend time with Julia and they play beautifully.  Julia, on the other hand, has always looked up to Jonah.  You can see in her eyes that she may think that he hung the moon.  It's so wonderful to see them enjoying each other again.

One morning, Simon and I were surprised at how late the kids were sleeping in - they were so quiet that even standing with the door cracked we couldn't hear them.  When we just couldn't believe they were all sleeping anymore, we peaked in and this is what we saw.  So grateful that we have kids who love to read!

Helsinki and Stockholm

The girls in Helsinki.  I can't even imagine Anna's face in another 10 years if she's already this full of sass.

This is the face that we hope lasts a lifetime.

The littles.  This has become Julia's favorite mode of transportation.  She may actually be the worlds slowest walker, so having her ride with Jonah suited us all while walking around Helsinki.

These loves - sometime, no matter how exciting the location, it is each other that they find the most exciting.  Helsinki had nothing on they fun they made for each other.

One of Noah's greatest joys this trip was getting to serve his brother and push his wheelchair all around.

Fresh raspberries from the Helsinki market - yes please!  Simon had to feed the kids like baby birds to make sure that everyone got a share of this delicious afternoon snack.

In Stockholm we visited this 17th century war ship, the Vasa, that sank on it's inaugural voyage.  It sat at the bottom of the ocean for over 300 years before it was rescued and restored.  It was a pretty cool looking ship and our favorite museum of the whole trip.

Stockholm is a city of islands.  The easiest way for tourists to get around is a hop on/hop off boat.  Stockholm is a beautiful city, our favorite port of our trip - the one was would be most likely to go back and visit - but even it's beauty doesn't compare to the beauty of the people who were in the hop on/hop off boat with us.

I never had a sister and never really felt like I missed out until I had the chance to see these 2 together.  They are great sisters to each other to have great care and admiration between them.  It is my prayer for them that as they get older they always hold onto the things that make them great sisters.

The boys capture wonder.  They're always looking, always asking, always wondering.  Noah coined his catch phrase of the summer, "I have a question" before every question he asked (and he literally asked 100s of questions).  We laughed at it, begging him to just ask his question, but really, it was the perfect illustration of wonder.

St. Petersburg

Ah, old Russian royalty - the excess and beauty was breathtaking.  Shortly after arriving in St. Petersburg we were off to the Peterhof Palace, which was the summer home of Peter the Great.  Apparently Peter was a bit of a prankster and had trick fountains around the grounds - fountains that look like statues and benches that suddenly spray water on the guest.  Here are two of the trick fountains - because the grounds were busy it was pretty easy to understand their tricks.

So many fountains! There are actually 150 fountains on the grounds.

Julia was feeling a little grumpy about not being carried.  As she loves pictures of herself, it didn't take long to turn this frown upside-down. 

What is more classic Russia than matryoshka dolls?  We had the opportunity to try and paint our own matryoshka dolls.  We had varying levels of success in painting, but everyone had fun.

I started as Jonah's paint partner, but I wasn't very good, so Elena, the artist in training, took over and Jonah ended up with a much nicer end product because of it.

Simon has a surprising artistic bend and with Julia's direction they ended up with a nice looking replica.

The middles 

The kids goofing off - trying to lift a pillar of Saint Issac's cathedral.

Peter the Great's winter palace which has been converted to the Hermitage museum which has over 3 million exhibits.  They say that it would take 10 years to see all of the exhibits.

In the Hermitage there is a Knight room.  At this point in our trip, Jonah was so tired that he slept through the whole Hermitage.  

Bolshoi St. Petersburg State Circus - this was perhaps the highlight of our St Petersburg adventure.

St. Petersburg was our longest port visit, which gave us more opportunity to explore.  It was an interesting city to visit and the touch communist Russia was still there to see.  

Estonia

I have heard that a weed is simply a flower someone decided didn't belong.  To Julia, dandelions are the most beautiful flower around.  Be it dandelions in Inverness or Estonia, Julia will always stop to pick the flowers.

Anna - a little piece of my heart.

Brothers at the door for the House of the Brotherhood of Black Heads.

The only kind of pigeon that is tolerable is a stone pigeon.  Tallinn was a fun city to walk around in and explore, but the pigeons were probably the highlight for the kids.

Getting Started and Berlin

In the dome of the Reichstag (German Parliament) building.  They have a mirrored center, so if you can find the correct angle, you can see into the parliament meetings while they are happening.  Not only was parliament not in session while we were there, but we couldn't find the angle.  It seems that only in theory do this dome represent government transparency.

The Holocaust Memorial in Berlin.  The narrow passageways are meant to symbolize the alone-ness of the holocaust and the blocks build these pathways, where you never know if friend or foe is around the corner.

The kids hanging out with Jessica, our tour guide with Simon works out foreign cash withdrawals with the bank.  We needed the cash to pay for ice cream, so the kids were reasonably patient as they waited.

Look at the smile - how could you not love that face?

Spiderman was also waiting for ice cream.  He was dairy-free this trip as there seems to be a dairy allergy trying to take form, but the sorbet was close enough for him.

A bit of the Berlin Wall in the background.  Most of the wall is down now, but it does stand near a few museums and monuments.

Checkpoint Charlie.  When I was a child, I lived in Germany for a few years and we came to Berlin once.  We passed through Checkpoint Charlie all those years ago as a legitimate checkpoint.  What stands today is all replica with actors dressed as US military who will pose for a picture for with for only a 4 euro (hence they're not posing for my pic).

The kids are ready to go ORD to CPH! (Chicago to Copenhagen)

A mere 8+ hours later on a red-eye flight - we've made it to Denmark!

A shower and a decent night of sleep and we're ready to head to the ship!

What do you do when your oncology team tells you in late June that you have a green-light pass to really travel - not small scale local trips, but real travel?  If you're us, you book something fabulous before they have the chance to change their minds and so that meant a 9 day cruise around the Baltics followed by almost a week exploring Denmark.  Sixteen days of uninterrupted family time with intermittent connection to the rest of the world at best.  Time to connect with each other, make memories, drink in togetherness, learn how to be together again, time to laugh, to celebrate and to choose joy.

How Do You Count a Year?

This is our kamp representation - 55 strong from Chicago, Denver and Houston (also known as "the red shirt mafia")

Anna clipping in for the official zipline.  Anna is very decisive and cannot be talked into things, but for her the zipline is no big deal and this is her second year doing it.  To me, this is just another example of Anna's strong personality - she will do exactly what she sets her mind to, but won't be talked into doing more (like the screamer or dock tower).  As a side note, I did the zipline with her, but had to be pushed off the starting block, because sometimes you just need a push in life.

Date night!  Officially to be tagged as #2DO16 for the next 52 weeks.  Can you get 40 dates with your spouse in in the next 52 weeks?  I bet we can......

Here is the heart of Kanakuk Kamps - Jonah really wanted to do the zipline like Noah & Anna, but it was deemed medically unsafe.  Kamp staff heard the heart of a little boy just wanting to be a little boy, and they rigged a special "Jonah only" zipline.  Staff that had a free period came and cheered Jonah on as the rope course team ran his zipline with all the safety and care they demonstrate for the traditional zipline.  At the end of the week, this has become Jonah's favorite memory of kamp this year.  It was in these moments that I learned that I could indeed love kamp just a little bit more.

Honestly, sometimes having a sibling with special needs is hard because everything seems to revolve around them.  Then again, sometime having a sibling with special needs has it perks, and this in one - Julia got to take a spin on Jonah's zipline.  Although there are no medical issues that prevent her from doing the traditional one, there is a weight requirement that she does not meet.  It was a special perk to make Julia feel special too.

Every year Noah pushes himself to try something scary.  In years past it's been water slides, tubing and bluff jumping.  This year, Noah took on 2 challenges - the zipline and the dock tower.  Both were scary, but he nailed them both.  The zipline is classically scary, but the dock tower freaks a lot of people out because it's pretty high and you jump into Lake Taneycomo, which averages about 48 degrees F.  We're so proud of Noah for standing up to things he's afraid of and trying them at least once.  In the spirit of adventure, Jonah expects that he should be recovered enough to climb the ladder next year and plans to attempt the dock tower himself at that point.  Dream big buddy, we're cheering you on!

More date night fun.  See, date nights don't have to only be solo.  This is a subset of our 55 who were living large on the "Landing" for a few hours.

Noah & Anna with their face painting during our "Sea Ya" party.  Palm trees and sharks - seems about right.

Liz hamming it up at the entrance to the "BARNacle Bash".  She was such a good sport - dressing up and trying things like the water slides, zipline and bluff jumping to name a few of her adventures.

Family photo time

One of my most favorite things about kamp, is that it gives my kids solid role models - people to aim to be like when they grow up.  I want those role models to be Simon & I and our friends, but I know that we're often just seen as boring adults.  Kamp does a great job of hiring amazing staff, that love God and serve others with their whole hearts - and these amazing counselors pour truth and love into the kids hearts, and that makes my heart swell.  This year, as a new tradition, the counselors gave each child a certificate recognizing 2 traits that characterize what they observed in the children during the week.  It really drove intentionality and gave us insight into who our kids are becoming when we're not around.

Jonah's welcome to his zipline.  Pictures speak 1,000 words, but don't convey the cheering and enthusiasm that greeted him.

Jonah and I after his jump/toss off the bluffs.  Last year, bluff jumping gave him a headache.  It seemed weird, but in perfect 20/20 hindsight, it was the hydrocephalous that gave him a headache.  We were mutually delighted, for different reasons, that this years jump didn't give him a headache.

This year, as in years past - Noah received a golden palm tree.  Every day 1 boy & 1 girl from each kid group receive the golden palm tree for something awesome the staff see in them.  This year, Noah received the award for his consistent enthusiasm and great attitude all week long and despite his past year.  Since he receives a golden palm tree every year, it may not seem that special, but only 5 boys in his age group receive the award each term.  Instead, it is a demonstration of how consistently positive, enthusiastic and warm Noah is at heart.

Anna on 1 more of her challenges - the high dive.  Clearly she's perfecting her style with a "walk-off" dive.  Again, there is no fear, no hesitation, as she has set her mind to executing this activity.  Boldly independent and very self-assured.

Kamp is a place where strangers become friends.  This is Anna & Jane.  I have long heard of Jane's family through a mutual friend, but after this week these strangers have become dear friends.  It's a wonderful shrinking of the world and a chance to grow our love for others.

Having Jonah & Julia in a kid group together was no small task, but the counselors managed it with ease and grace - loving both kids differently but fully for the week.

Julia had a blast at kamp and reaps the benefit of being the youngest of 4, which meant that she got to experience a lot more of the late night kamp activities than her siblings did in years past.  Through it all, she was our little joy and sunshine - always ready for adventure and fun.

Family Olympic Night followed by a color run.  Nothing says family like sweating together in 85+ degree temps with 80%+ humidity at 7:30 at night.  Isn't the moto something like - a family that sweats together stays together?  Mummy's archery skills, Liz's pitching skills, Anna's tennis skills, daddy's carrying skills, Noah's soccer skills and Julia's enthusiasm were especially helpful in the olympic competition.

Jonah owning his look at the "Sea Ya" party.

And just like kamp ended and sent us shooting into the real world, so Anna shoots from the wet willy - perfecting her seated landing like a pro.

How do you count a year?  For me it's the absolute dates, July 22nd and July 24th.  For Simon it's how days fall within the month - the Wednesday and Friday after kamp.   Either way, we're there - the year anniversary of when Jonah was diagnosed (7/22) and the anniversary of the surgery that both helped to save him and change him forever (7/24).  For a year, we have walked through a fire that has refined us, stretched us, grown us and pushed us to see what we can handle and what we truly believe.  We have fresh eyes to see the things that matter and freedom from the things that don't.  We have sifted through all the things people say during hard times, discarded the things that are trite - answers that are too pat and easy to come by, and owned the hard truths of life.

It's weird - walking through the most terrible times are when you are given the eyes to see and the heart to hear the character of God in a way that is more real than in the normal everyday.  At least it has been that way for me.  Before Jonah got sick, I believed that although life isn't perfect, God is good.  I believed God's heart breaks for the suffering on this earth.  I believed that God is sovereign in all situations.  I wondered sometimes, how deeply I believed these things, and if my belief was strong enough to stand in the face of the impossible.  I wish I hadn't wondered, but on the other side, I'm so grateful to know that all of those beliefs are solid and true.  I have wrestled with them, wanting them to be true but my circumstances to be different.  And somewhere along the way, I came to realize that truth and life and circumstances are often hard and true at the same time and that accepting that goes  a long way.  

In this world, we want the hard things to be easy and the easy things to be true, but that's not how life is scripted.  Things are often hard and true - nothing makes them easy - they are painful, messy, scary and overwhelming, but they are also true.  For example, what I mean is that for us, our lives are governed by Jonah's 3 month scans.  We can't plan Thanksgiving or Christmas or commit to vacations for next summer, because any of the scans between now and then could reveal our worst fear - the cancer is back.  For the next year actually, Jonah is at the greatest risk of recurrence, although even after the year he's not out of the woods.  Grappling with this reality is hard.  No one can change that - there is no miracle cure or assurance of a future.  It's also true though - we don't lean too much on numbers and stats right now, but they do exist for a reason.  Hard and true.  And so, even out of treatment, we manage our days one at a time - relying on God's grace to be sufficient for today, enjoying the blessings of the day.

In that spirit, last week we went back to Kanakuk K-Kauai Family Kamp.  This is where we were last year, the week before Jonah was diagnosed, when he was so sick - throwing up multiple times a day, so lethargic we could rarely get him into the pool, always tired and cold.  I spent almost as much time on the phone with his GI team that week as I did with my friends, as we were sure his symptoms where GI related.  Because of that, I was a little scared to go back.  Worried that it would be place that only held reminders.  Instead, it was a place filled with grace, with love, with hope, with compassion and with prayer.  The hard memories of kamp were redeemed with laughter, joy and peace.  God's grace sufficient for today, enjoying the blessing of kamp.

In all of the redemption of kamp, I did have a moment of falter.  A moment where I wanted to gather all the blessings into today and be able to control the outcome.  All during treatment, we fought to do things like go to kamp.  We fought to be able to go back to our "normal" life with a new perspective.  For today, we have won that fight - we are  "normal" again.  But we're not.  This past year has forever changed us.  We are no longer normal, but we are no longer in treatment.  It's a world I could live in, learn to consider "normal", if I knew we would never go back to treatment - but I don't know that.  And so, for a moment, I was untethered - neither normal nor treatment, and then God lifted my eyes to the blessing of today - the chance to be together today.  

I know very little with confidence, but I do know that this journey is not linear.  There are ups and downs, times we stumble and times we dust off and get up.  As we move into a year of anniversaries, I am thankful for all the many ways that God has shown up in our year - the things we've learned.  We will continue to grapple with the hard truths that come with our story, but we will do so continuing to rely on grace sufficient for today.